You Should Never Look a Gift Horse in the Mouth: One-Size-Fits-All Compensation in Wrongful Conception

This article reconsiders the House of Lords decision in Rees v. Darlington Memorial Hospital NHS Trust (2003) and the decision to award a conventional award of £15,000 in all cases of failed sterilisation resulting in the birth of an unwanted child. In so doing, it briefly recites the history of the Wrongful Conception action and the unique facts of Rees. It then goes on the consider the implications of two fundamental aspects of the judgment. Firstly, it looks at the 'conventional award' itself and considers the reasoning behind the award and the effect that it has on our understanding of (particularly women's) reproductive autonomy. Secondly, it analyses the rather 'unique' judgment of Lord Scott and his decision to evaluate these cases using the possessory analogy of an unwanted foal; particular focus is given to the notion of parental 'choice' in these cases and whether mitigation (i.e. abortion or adoption) can ever be considered "reasonable".

Gender comparisons in non-acute cardiac symptom recognition and subsequent help-seeking decisions: a mixed methods study protocol

Introduction: Coronary heart disease (CHD) is one of the leading causes of death in both men and women worldwide. Despite the common misconception that CHD is a ‘man's disease’, it is now well accepted that women endure worse clinical outcomes than men following CHD-related events. A number of studies have explored whether or not gender differences exist in patients presenting with CHD, and specifically whether women delay seeking help for cardiac conditions. UK and overseas studies on help-seeking for emergency cardiac events are contradictory, yet suggest that women often delay help-seeking. In addition, no studies have looked at presumed cardiac symptoms outside an emergency situation. Given the lack of understanding in this area, an explorative qualitative study on the gender differences in help-seeking for a non-emergency cardiac events is needed. Methods and analysis: A purposive sample of 20–30 participants of different ethnic backgrounds and ages attending a rapid access chest pain clinic will be recruited to achieve saturation. Semistructured interviews focusing on help-seeking decision-making for apparent cardiac symptoms will be undertaken. Interview data will be analysed thematically using qualitative software (NVivo) to understand any similarities and differences between the way men and women construct help-seeking. Findings will also be used to inform the preliminary development of a cardiac help-seeking intentions questionnaire. Ethics and dissemination: Ethical approvals were sought and granted. Namely, the University of Westminster (sponsor) and St Georges NHS Trust REC, and the Trust Research and Development Office granted approval to host the study on the Queen Mary's Roehampton site. The study is low risk, with interviews being conducted on hospital premises during working hours. Investigators will disseminate findings via presentations and publications. Participants will receive a written summary of the key findings.

The compassion gap in UK universities

Context: This critical reflection is set in the context of increasing marketisation in UK higher education, where students are seen as consumers, rather than learners with power. The paper explores the dark side of academic work and the compassion gap in universities, in order to make recommendations for practice development in higher education and the human services. Aims: The paper aims to show how reflexive dialogue can be used to enable the development of compassionate academic practice. Conclusions and Implications for Practice: Toxic environments and organisational cultures in higher education have compounded the crisis in compassionate care in the NHS. Implications for practice are: • Narrative approaches and critical appreciative inquiry are useful methods with which to reveal, and rectify, failures of compassion; • Courageous conversations are required to challenge dysfunctional organisational systems and processes; • Leadership development programmes should include the application of skills of compassion in organisational settings.

Business Process Modelling based on formal temporal theory with an application to hospital patient flows

Existing Workflow Management Systems (WFMSs) follow a pragmatic approach. They often use a proprietary modelling language with an intuitive graphical layout. However the underlying semantics lack a formal foundation. As a consequence, analysis issues, such as proving correctness i.e. soundness and completeness, and reliable execution are not supported at design level. This project will be using an applied ontology approach by formally defining key terms such as process, sub-process, action/task based on formal temporal theory. Current business process modelling (BPM) standards such as Business Process Modelling Notation (BPMN) and Unified Modelling Language (UML) Activity Diagram (AD) model their constructs with no logical basis. This investigation will contribute to the research and industry by providing a framework that will provide grounding for BPM to reason and represent a correct business process (BP). This is missing in the current BPM domain, and may result in reduction of the design costs and avert the burden of redundant terms used by the current standards. A graphical tool will be introduced which will implement the formal ontology defined in the framework. This new tool can be used both as a modelling tool and at the same time will serve the purpose of validating the model. This research will also fill the existing gap by providing a unified graphical representation to represent a BP in a logically consistent manner for the mainstream modelling standards in the fields of business and IT. A case study will be conducted to analyse a catalogue of existing ‘patient pathways’ i.e. processes, of King’s College Hospital NHS Trust including current performance statistics. Following the application of the framework, a mapping will be conducted, and new performance statistics will be collected. A cost/benefits analysis report will be produced comparing the results of the two approaches.

A general framework for Business Process Modelling (BPM) based on Formal Temporal Theory with an application to Hospital Patient flows

Existing Workflow Management Systems (WFMSs) follow a pragmatic approach. They often use a proprietary modelling language with an intuitive graphical layout. However the underlying semantics lack a formal foundation. As a consequence, analysis issues, such as proving correctness i.e. soundness and completeness, and reliable execution are not supported at design level. This project will be using an applied ontology approach by formally defining key terms such as process, sub-process, action/task based on formal temporal theory. Current business process modelling (BPM) standards such as Business Process Modelling Notation (BPMN) and Unified Modelling Language (UML) Activity Diagram (AD) model their constructs with no logical basis. This investigation will contribute to the research and industry by providing a framework that will provide grounding for BPM to reason and represent a correct business process (BP). This is missing in the current BPM domain, and may result in reduction of the design costs and avert the burden of redundant terms used by the current standards. A graphical tool will be introduced which will implement the formal ontology defined in the framework. This new tool can be used both as a modelling tool and at the same time will serve the purpose of validating the model. This research will also fill the existing gap by providing a unified graphical representation to represent a BP in a logically consistent manner for the mainstream modelling standards in the fields of business and IT. A case study will be conducted to analyse a catalogue of existing ‘patient pathways’ i.e. processes, of King’s College Hospital NHS Trust including current performance statistics. Following the application of the framework, a mapping will be conducted, and new performance statistics will be collected. A cost/benefits analysis report will be produced comparing the results of the two approaches.

Graded Exercise Therapy Guided Self-Help Trial for Patients with Chronic Fatigue Syndrome (GETSET): Protocol for a Randomized Controlled Trial and Interview Study

Background: Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), is characterized by chronic disabling fatigue and other symptoms, which are not explained by an alternative diagnosis. Previous trials have suggested that graded exercise therapy (GET) is an effective and safe treatment. GET itself is therapist-intensive with limited availability. Objective: While guided self-help based on cognitive behavior therapy appears helpful to patients, Guided graded Exercise Self-help (GES) is yet to be tested. Methods: This pragmatic randomized controlled trial is set within 2 specialist CFS/ME services in the South of England. Adults attending secondary care clinics with National Institute for Health and Clinical Excellence (NICE)-defined CFS/ME (N=218) will be randomly allocated to specialist medical care (SMC) or SMC plus GES while on a waiting list for therapist-delivered rehabilitation. GES will consist of a structured booklet describing a 6-step graded exercise program, supported by up to 4 face-to-face/telephone/Skype™ consultations with a GES-trained physiotherapist (no more than 90 minutes in total) over 8 weeks. The primary outcomes at 12-weeks after randomization will be physical function (SF-36 physical functioning subscale) and fatigue (Chalder Fatigue Questionnaire). Secondary outcomes will include healthcare costs, adverse outcomes, and self-rated global impression change scores. We will follow up all participants until 1 year after randomization. We will also undertake qualitative interviews of a sample of participants who received GES, looking at perceptions and experiences of those who improved and worsened. Results: The project was funded in 2011 and enrolment was completed in December 2014, with follow-up completed in March 2016. Data analysis is currently underway and the first results are expected to be submitted soon. Conclusions: This study will indicate whether adding GES to SMC will benefit patients who often spend many months waiting for rehabilitative therapy with little or no improvement being made during that time. The study will indicate whether this type of guided self-management is cost-effective and safe. If this trial shows GES to be acceptable, safe, and comparatively effective, the GES booklet could be made available on the Internet as a practitioner and therapist resource for clinics to recommend, with the caveat that patients also be supported with guidance from a trained physiotherapist. The pragmatic approach in this trial means that GES findings will be generalizable to usual National Health Service (NHS) practice.

Defining ‘Community’ for Community Translation

Unlike community interpreting, community translation engages with the members of the community both at individual and group levels. This duality of the process makes the identification of the community as a socio-cultural entity and of its individual members all the more important. There have been several attempts to define the concept of ‘community’ in different professional and academic contexts. Mindful of the difficulty of defining community, the paper proposes three methods that can help community translators in visualizing the characteristics of the intended audience and in making informed translation decisions. The three methods, derived from user-centred translation, are scrutinized using a case study based on a real-life National Health Service (NHS) text.

Toxicity profile of bevacizumab in the UK Neurofibromatosis Type 2 cohort

Bevacizumab is considered an established part of the treatment strategies available for schwannomas in patients with Neurofibromatosis Type 2(NF2). In the UK, it is available through NHS National Specialized Commissioning to NF2 patients with a rapidly growing target schwannoma. Regrowth of the tumour on suspension of treatment is often observed resulting in prolonged periods of exposure to bevacizumab to control the disease. Hypertension and proteinuria are common events with bevacizumab use and there are concerns with regards to the long-term risks of prolonged treatment. Dosing, demographic and adverse event(CTCAE 4.03) data from the UK NF2 bevacizumab cohort are reviewed with particular consideration of renal and cardiovascular complications. Eighty patients (48 male:32female), median age 24.5 years (range 11-66years), were followed for a median of 32.7 months (range 12.0–60.2months). The most common adverse events were fatigue, hypertension and infection. A total of 19/80 patients (24%) had either a grade 2 or grade 3 hypertension event and 14/80 patients (17.5%) had proteinuria. Of 36 patients followed for 36 months, 78% were free from hypertension and 86% were free of proteinuria. Logistic regression modeling identified age and induction dosing regime to be predictors of development of hypertension with dose of 7.5mg/kg three weekly and age >30years having higher rates of hypertension. Proteinuria persisted in one of three patients after cessation of bevacizumab. One patient developed congestive heart failure and the details of this case are described. Further work is needed to determine optimal dosing regimes to limit toxicity without impacting on efficacy.

Working with people affected by cancer – Phase 1 of a mixed methods exploration of practitioner perspectives in nutritional therapy

Introduction - Nutritional therapy (NT) is a bioscience-based branch of complementary and alternative medicine (CAM) with National Occupational Standards (NOS) and accredited training courses which include compulsory clinical training. Approximately 900 practitioners are registered with the voluntary regulator, the Complementary and Natural Healthcare Council (CNHC), but the number of unregulated practitioners is unknown. Cancer is a leading cause of death worldwide; nutrition and lifestyle factors may affect recurrence and survival rates. Many cancer patients and survivors seek individualised advice on diet and use of supplements and appropriately skilled nutritional therapy practitioners (NTP) may be well-placed to safely provide this advice. Little is known of NTPs’ perspectives on working with people affected by cancer; this study seeks to explore their views on training, use of evidence and other resources, to support the development of safe evidence-based practice in this important clinical area. Methods – An on-line anonymised questionnaire collected data from participants recruited from all UK registered NTPs. Recruitment was facilitated by the British Association for Applied Nutrition and Nutritional Therapy (BANT). Quantitative data on practitioner characteristics, years in practice, other therapies practiced and work with cancer clients were collected. Qualitative data on types of evidence used, barriers to practice and perceived training and support needs when working with clients with cancer, were collected and analysed. SPSS was used to produce descriptive statistics. Preliminary Results – 274/888 (31%) of registered NTPs participated. 61% respondents had accredited NT qualifications of which 46% were at degree or post-graduate level. 73% (202) participants indicated they also had other higher education qualifications, including 153 (56%) at degree or above. When asked to describe their position on cancer work, 17% respondents (40/238) indicated no interest, and 35% (84/238) respondents already work with cancer clients (cancer practitioners - CP). A further 48% (114/238) respondents expressed interest in starting cancer work, and typically requested specialist training and practice guidelines to support this area of clinical practice. Cancer practitioners (CP) rated searches of peer-reviewed literature as most useful for information to support practice, whereas commercial product information was rated least useful. CPs requested engagement with mainstream medicine, more access to research evidence and professional recognition to facilitate and support work with cancer clients. A need for professional networking, mentorship and/or supervision was noted by CP and non-CP respondents, which is of interest since 81% all participants worked as sole practitioners exclusively or as part of their practice, <1% worked within the NHS. Discussion & Conclusions – This is the first detailed documentation of NTP perspectives on cancer work. A number of areas have been identified for further detailed evidence to be collected using focus groups and interviews, including detailed training needs, communication with mainstream cancer professionals, access to research evidence, and professional recognition. This work will inform and support the development of professional practice guidelines for NT and inform the development of specialist training and other resources.

Barriers to working with people affected by cancer: Preliminary qualitative data from a mixed methods exploration of practitioner perspectives in nutritional therapy

Introduction: Cancer is a leading cause of death worldwide. Nutrition may affect occurrence, recurrence and survival rates and many cancer patients and survivors seek individualized nutrition advice. Appropriately skilled nutritional therapy (NT) practitioners may be well-placed to safely provide this advice, but little is known of their perspectives on working with people affected by cancer. This mixed-methods study seeks to explore their views on training, barriers to practice, use of evidence, and other resources, to support the development of safe evidence-based practice. Preliminary data on barriers to practice are reported here. Methods: Two cohorts of NT practitioners were recruited from all UK registered NT practitioners, by an on-line anonymous survey. 84 cancer practitioners (CP) and 165 non-cancer practitioners (NCP) were recruited. Mixed quantitative and qualitative data was collected by the survey. Content analysis was used to analyze qualitative data on the use of evidence, barriers to practice and perceived needs for working with clients with cancer, for further exploration using interviews and focus groups. Preliminary results: For the NCP cohort, exploring themes of perceived barriers to working with people affected by cancer suggested that perceived complexity, risk and need for caution in this area of practice were important barriers. Insufficient specialist knowledge and skills also emerged as barriers. Some NCPs perceived opposition from medical practitioners and other mainstream healthcare professions as an obstacle to starting cancer practice. To overcome these barriers, specialist training emerged as most important. For the CP cohort, in exploring the skills they considered enabled them to undertake cancer work, specialist clinical and technical knowledge emerged strongly. Only 10% CP participants did not want more work with people affected by cancer. 10% CPs reported some NHS referrals, whereas most received clients by self-referral or from other practitioners. When considering barriers that impede their cancer practice, the dominant categories for CPs were hostility or opposition by mainstream oncology professionals, and lack of dialogue and engagement with them. To overcome these barriers, CPs desired engagement with oncology professionals and recognized specialist cancer NT training. For both NCPs and CPs, evidence resources, practice guidelines and practitioner support networks also emerged as potential enablers to cancer practice. Conclusions: This is the first detailed exploration of NT practitioners’ perceived barriers to working with people affected by cancer. Acquiring specialist skills and knowledge appears important to enable NCPs to start cancer work, and for CPs with these skills, the perceived barriers appear foremost in the relationship with mainstream cancer professionals. Further exploration of these themes, and other NT practitioner perspectives on working with people affected by cancer, is underway. This work will inform and support the development of professional practice, training and other resources.

The political economy of co-ordination challenges in the National Health Service: a postpositivist evaluation of diabetes policy and governance

The present PhD thesis develops and applies an evaluative methodology suited to the evaluation of policy and governance in complex policy areas. While extensive literatures exist on the topic of policy evaluation, governance evaluation has received less attention. At the level of governance, policymakers confront choices between different policy tools and governance arrangements in their attempts to solve policy problems, including variants of hierarchy, networks and markets. There is a need for theoretically-informed empirical research to inform decision-making at this level. To that end, the PhD develops an approach to evaluation by combining postpositivist policy analysis with heterodox political economy. Postpositivist policy analysis recognises that policy problems are often contested, that choices between policy options can involve significant trade-offs and that knowledge of policy options is itself dispersed and fragmented. Similarly, heterodox economics combines a concept of incommensurable values with an appreciation of the strengths and weaknesses of different institutional arrangements to realise them. A central concept of the field is coordination, which orientates policy analysis to the interactions of stakeholders in policy processes. The challenge of governance is to select the appropriate policy tools and arrangements which facilitate coordination. Via a postpositivist exploration of stakeholder ‘frames’, it is possible to ascertain whether coordination is occurring and to identify problems if it is not. Evaluative claims of governance can be made where arrangements can be shown to frustrate the realisation of shared values and objectives. The research makes a contribution to knowledge in a number of ways a) a distinctive evaluative approach that could be applied to other areas of health and public policy b) greater appreciation of the strengths and weaknesses of different forms of evidence in public policy and in particular health policy and c) concrete policy proposals for the governance and organisation of diabetes services, with implications for the NHS more broadly.